Last night was a difficult night for me. I could not sleep. I just kept remembering my baby and certain details about her very short existence. I began crying when I thought that she may never have seen my face. The two times she was capable of opening her eyes, she looked at her father and a friend of the midwife's. In the NICU, she could not open her eyes. Once a nurse opened her eyelids and noticed that she was moving her eyes in the direction of sound. I went on the other side of her and called her name and she moved her eyes to look at me. I am not sure, though, if she was capable of sight.
This was one of the happiest days I shared with my baby in the NICU and, ironically, it was the beginning of the end. That day, the talk had shifted from putting in a trache and sending her home in a "vegetative" state to getting her breathing on her own and nursing. That day, things looked up.
The next day, she crashed. She was, again, unresponsive. We told the doctor that we believed she had an infection but our concerns were blown off. Two hours before she died, the doctor on call told us that he felt she had an infection. He also told us that this was the end and that he would not resuscitate her because her little body had already been through so much. He thought that she would die right away and so he quickly got her out of her crib and asked me if I wanted to hold her. I didn't need to think about it.
She held on for nearly 2 1/2 hours. I gave her life and I held her as the life left her. I am not sure how to get over this.
The NICU staff treated her like an object. Their main objective, at first, was to get us to pull the plug. We refused several times but "no" wasn't good enough. They gave up and just did nothing. They gave up and just let her get worse until she- on her own- began to get better. Then they began doing something for her. Until then, though, they just let her lay there waiting to die since we wouldn't pull the plug on her.
Certain nurses never bothered to reposition her or speak to her or even monitor her temperature even though I begged them too. She was an object; not a person. I never knew how pro- death doctors and hospitals were.
The night before she died, I knew she was going to die if she did not get help soon. I begged several times for the doctor to see her and he wouldn't. He refused. The next morning, we waited until rounds to talk with the doctor because that was when we were told we could finally see him. We waited and waited and, when we asked what was taking so long, we were told that they had decided to take a break from rounds. It was not until I asked whether or not the number of times I had asked to see the doctor had been charted that rounds finally continued.
This is the bottom line: being sued. Money. It all comes down to money.
It also is a case of pulling the plug on hopeless and useless cases so that space can be better occupied by babies that will life a productive life. My baby was an object that took up space; she was not a person or a life. She was not my child... She was a thing. Medical ethics at its finest, I suppose.
It is one thing to mourn over the loss of a child but another entirely to have to deal with this sort of evil and injustice. Today I will pray for every baby and parent in the NICU and for the people who care for them. I pray that the parents may be given the strength they need to carry on and make good decisions despite what the doctors think. I pray that the doctors and nurses may receive the grace they need to operate in a compassionate and loving way and that they may be moved to view each baby as a human being- worthy of care and respect. Finally, I pray for the babies; that God may comfort them and always let His presence be known to them.
Friday, March 30, 2012
Thursday, March 29, 2012
How Grief Looks
After four terrible weeks in the NICU at the local Children's Hospital, my baby's body finally gave in and she took her last breath in my arms. Because she had been sick since birth, I had time to think about what would happen i she were to die. First of all, I thought that I would not be able to handle it. I thought that I would go nuts.
But when she died, I was fairly calm. I knew by the way her monitors looked that she was dying and I began praying. I never thought I would pray at a time like this; I always thought I would just scream and cry. But I prayed. It was automatic but not without emotion. I first prayed the "Hail Mary" because I suppose I needed her strength. Then I prayed the "Lord's Prayer", the "Salve Regina" and the "Prayer to St. Michael." Then I cried. I called out for Our Blessed Mother and I gave myself to God at that point just like Jesus commended His spirit to God before his death. That is all I could have done; it was happening and I couldn't stop it.
Then I thought that it as over. It was done. I thought that the next few weeks would be difficult but then things would get better. I had no idea that it was really just beginning. I had no idea what challenges, thoughts and feelings lay ahead.
That was October. Now it is nearly the end of March and I am starting to look back on things. I find it strange that things were not as I thought they would be. I thought that things would be bad and then get increasingly better. I thought that the grieving process would look like a graph with a steady, upward slope. I also thought that, by now, I would feel much better and that I would be at peace with things.
How silly I was! In reality, the slope of my grief graph has an incline but it is not steady or smooth, there are many drops along the way and, although these drops are fewer as time goes by, they still exist. I still have bad days- sometimes very bad days.
I think what happens is that the emotional gives way to the rational and I start to think and remember. Also, I am no longer in shock and I know now that Barbara Bernadette will never come back. Some memories still feel so real and new while others are fading away. There is a calmness about my grief, now, when there wasn't before. I guess if my grief graph was colored, it would begin very red and then blue and then red and then fade into a deep blue with fewer red segments. Red is all emotion- intense sorrow and pain. Blue is a calm sort of acceptance. I am at deep blue at the moment.
It seems like my feelings change constantly and I feel things and think things that I never thought I could think or feel before. I feel angry, I feel sad, I feel lonely and sometimes I actually feel OK. Then I feel guilty that I feel OK.
Sometimes I feel fine and then I remember something or someone says something and I feel terrible. Then I believe that I have regressed somewhat. Then I feel angry with myself because I ought to be progressing- not regressing.
I guess one thing I have learned is that you can't control your grief; you just have to let it go where it will. You just have to own it and accept it. You just have to give it to God. You just have to keep in constant contact with Him and ask for help.
I try not to punish myself for regressing but I do find that others believe that, by this point, I ought to be over it and on the up and up. This hurts and only makes things worse. it is one thing to feel bad but another entirely to feel like a freak because I feel bad! Unless someone has also lost a baby, they have no idea what it is like and therefore have no right to criticize someone who has. This, obviously, creates issues and distance between myself and others and I either have to stop speaking with these people or never let them know how I feel. Either way, I feel hurt and betrayed. This looks black; isolation is black. Betrayal is black. Feeling let down is black.
Anyhow, maybe the regressions are not regressions at all; maybe they are a natural part of it all...? Maybe I should stop expecting so much of myself and just be how I have to be in order to just live sometimes because sometimes just living is hard enough. Maybe it is better to look at the reality of things- what I have been through and how miraculous it is that I am getting through it...
So, my graph is misshapen and discolored. My life, now, feels misshapen and discolored. Nothing is the same. Nothing will ever be the same. My entire family has to fit into a new shape- that of a family circle with a hole somewhere within it where my fourth child should be.
Nothing about my grief has been predictable or understandable. I suppose this is OK since nothing about life really is predictable and understandable. Nothing about my baby's life was predictable and understandable. We were- and are- at the mercy of God in all things and only God knows what will be with complete certainty. This may sound frightening and, in some ways it is. To realize that we are not in control and that only God is is scary. At the same time, though, it is comforting to know that He does have a plan and that things- no matter how painful- will work out for the best. It may not be what we think is best- but it really will be for the best. This is one constant comfort in a world full or so many questions and concerns.
If we are not in control, then why bother to fight it? In the end, all I can do is accept my loss. Acceptance is white and gold- the color of vestments on important Feast Days and Church Holy Days. The little Infant of Prague wears white and gold on Church feast days as well... All I can do is accept and rely on God; there really is nothing else to do- after all, white and gold are wonderful colors of a celebratory nature!
"With expectation I have waited for the Lord and he was attentive to me.
And he heard my prayers, and brought me out of the pit of misery and the mire of the dregs.
And he set my feet upon a rock, and directed my steps.
And he put a new canticle into my mouth, a song to our God.
Many shall see, and shall fear: and they shall hope in the Lord."
- Psalm 39:2-4 (Douay- Rheims; St. Benedict Press)
But when she died, I was fairly calm. I knew by the way her monitors looked that she was dying and I began praying. I never thought I would pray at a time like this; I always thought I would just scream and cry. But I prayed. It was automatic but not without emotion. I first prayed the "Hail Mary" because I suppose I needed her strength. Then I prayed the "Lord's Prayer", the "Salve Regina" and the "Prayer to St. Michael." Then I cried. I called out for Our Blessed Mother and I gave myself to God at that point just like Jesus commended His spirit to God before his death. That is all I could have done; it was happening and I couldn't stop it.
Then I thought that it as over. It was done. I thought that the next few weeks would be difficult but then things would get better. I had no idea that it was really just beginning. I had no idea what challenges, thoughts and feelings lay ahead.
That was October. Now it is nearly the end of March and I am starting to look back on things. I find it strange that things were not as I thought they would be. I thought that things would be bad and then get increasingly better. I thought that the grieving process would look like a graph with a steady, upward slope. I also thought that, by now, I would feel much better and that I would be at peace with things.
How silly I was! In reality, the slope of my grief graph has an incline but it is not steady or smooth, there are many drops along the way and, although these drops are fewer as time goes by, they still exist. I still have bad days- sometimes very bad days.
I think what happens is that the emotional gives way to the rational and I start to think and remember. Also, I am no longer in shock and I know now that Barbara Bernadette will never come back. Some memories still feel so real and new while others are fading away. There is a calmness about my grief, now, when there wasn't before. I guess if my grief graph was colored, it would begin very red and then blue and then red and then fade into a deep blue with fewer red segments. Red is all emotion- intense sorrow and pain. Blue is a calm sort of acceptance. I am at deep blue at the moment.
It seems like my feelings change constantly and I feel things and think things that I never thought I could think or feel before. I feel angry, I feel sad, I feel lonely and sometimes I actually feel OK. Then I feel guilty that I feel OK.
Sometimes I feel fine and then I remember something or someone says something and I feel terrible. Then I believe that I have regressed somewhat. Then I feel angry with myself because I ought to be progressing- not regressing.
I guess one thing I have learned is that you can't control your grief; you just have to let it go where it will. You just have to own it and accept it. You just have to give it to God. You just have to keep in constant contact with Him and ask for help.
I try not to punish myself for regressing but I do find that others believe that, by this point, I ought to be over it and on the up and up. This hurts and only makes things worse. it is one thing to feel bad but another entirely to feel like a freak because I feel bad! Unless someone has also lost a baby, they have no idea what it is like and therefore have no right to criticize someone who has. This, obviously, creates issues and distance between myself and others and I either have to stop speaking with these people or never let them know how I feel. Either way, I feel hurt and betrayed. This looks black; isolation is black. Betrayal is black. Feeling let down is black.
Anyhow, maybe the regressions are not regressions at all; maybe they are a natural part of it all...? Maybe I should stop expecting so much of myself and just be how I have to be in order to just live sometimes because sometimes just living is hard enough. Maybe it is better to look at the reality of things- what I have been through and how miraculous it is that I am getting through it...
So, my graph is misshapen and discolored. My life, now, feels misshapen and discolored. Nothing is the same. Nothing will ever be the same. My entire family has to fit into a new shape- that of a family circle with a hole somewhere within it where my fourth child should be.
Nothing about my grief has been predictable or understandable. I suppose this is OK since nothing about life really is predictable and understandable. Nothing about my baby's life was predictable and understandable. We were- and are- at the mercy of God in all things and only God knows what will be with complete certainty. This may sound frightening and, in some ways it is. To realize that we are not in control and that only God is is scary. At the same time, though, it is comforting to know that He does have a plan and that things- no matter how painful- will work out for the best. It may not be what we think is best- but it really will be for the best. This is one constant comfort in a world full or so many questions and concerns.
If we are not in control, then why bother to fight it? In the end, all I can do is accept my loss. Acceptance is white and gold- the color of vestments on important Feast Days and Church Holy Days. The little Infant of Prague wears white and gold on Church feast days as well... All I can do is accept and rely on God; there really is nothing else to do- after all, white and gold are wonderful colors of a celebratory nature!
"With expectation I have waited for the Lord and he was attentive to me.
And he heard my prayers, and brought me out of the pit of misery and the mire of the dregs.
And he set my feet upon a rock, and directed my steps.
And he put a new canticle into my mouth, a song to our God.
Many shall see, and shall fear: and they shall hope in the Lord."
- Psalm 39:2-4 (Douay- Rheims; St. Benedict Press)
Introduction
I used to read other blogs and wonder why and how people could post such personal stuff on the internet for everyone to see. I thought that someone who could share such personal thoughts and feelings with just anyone probably has some issues or, at least, has narcissistic tendencies. I no longer can think this way because I now know how terrible and lonely life can be and so I can understand (to some extent) why people write the things they do online. I also think that it is easier to write things for an audience of strangers than it is to tell people something face- to- face. Unfortunately, in our society, we have an issue with being honest about our feelings and also have an issue with personal space and closeness. I suppose this can drive someone to feel better about posting things online rather than telling people things in real life.
I must identify myself as a Catholic because there is just no way of getting around it; if it isn't an issue at the beginning, it will be one as blog entries are published because practicing Catholics are... well... different. It is just as much a culture as it is a religion- especially if one is trying in earnest to live their religion. Catholicism permeates every aspect of my existence and- to a large extent- makes me who I am. I am inseparable from the Church and she is inseparable from me.
Catholics don't believe that dead people become angels; angels are pure spirits that were created before people existed. They are not people and people are not angels; people can never be angels. People die and their souls are always the soul of a human being. This is one thing that sets Catholics apart from followers of other religions. Catholics believe that people go to heaven, purgatory or hell when they die. We also believe that the body dies but the soul does not. We believe that, in the end, our souls will be reunited with our bodies and affirm this every time we say certain prayers; it is actually an important tenant in our belief system. So, things like this are obviously issues when it comes to talking about death with non- Catholics.
So it is hard to hear well- meaning people tell me all about how my baby girl is now an angel... It is also hard to hear people tell me that God knows best and that He has a plan for us when, even though I know this is true, my heart is breaking. There has been a lot that has gone on over the past 6 months that has shaken my faith and has changed my life forever. I think of my faith as a life- saving raft that I must cling to in very stormy seas. This analogy has helped me to hang on even when life seemed unbearable and my humanity gets the best of me.
The death of my four- week old baby girl has changed every aspect of my existence. Nothing is the same. I find that I can't relate to anyone anymore and that I have had to deal with this more- or- less alone because no one "knows what to say". Being so alone in my grief, I have realized that all I have is God; that all else is temporary and fleeting. This is very comforting but also inspires a feeling of extreme desolation. I feel very isolated.
My pastor has been very kind to my husband and I; he prays for us everyday and has met with us when things got really bad. He drove an hour each way to visit my baby in the NICU and to administer "anointing of the sick." It was wonderful to have a messenger of God in such a Godless place. But I have found that women who used to smile and say "hello" to me now just avoid me and stay as far away as possible. It is as if they believe that death is catching. This has hurt. I had hoped to find some support within my parish community but I am finding that this is not going to happen. It seems that some Catholics have forgotten the command to love each other.
So many good things are happening to other people and, although I am happy for them, I just can't relate. I feel so left out. I can't even speak with my best friend anymore. She is so happy and I believe that I can't pretend that things are OK anymore. I don't want to bring her down.
I feel very angry with the doctors, with my family and with God. There is no way of coming to terms with such a loss and it seems so cruel and incomprehensible that God should see fit to take away small babies from the arms of their parents. I know that He does, though, constantly. When I visit my baby at the cemetery, I see hundreds of graves belonging to babies and very small children and I think "what kind of God is this?" I think about each of these parents and the heartache they feel; their tears could easily fill up an ocean. Then I think about all the other baby graves in the US and then all around the world and I know that I am not alone in my grief; there are millions of other mothers in my position.
I pray that these mothers have support and are comforted by friends and family but I am sure that many are not. I am sure that many of these mothers feel much like I do: alone. The mere fact that we have lost babies seems to necessarily separate us from those who haven't lost babies. NO ONE can understand unless they have gone through the same loss.
So, I have decided to break my silence in a very public way. I hope that other mothers will find this blog and read it and understand that they are not alone- that I am thinking of them and praying for them and that we are united in our grief. I also want to express my thoughts and feelings so that others who think and feel the same things will know that they are not nuts and that someone out there understands. It is so hard to say certain things because we are just expected to go about things quietly and most people expect us to just "get over it."
Some of the things I will write will be very personal and embarrassing. I don't mind exposing myself in this way as long as other women may be helped and comforted and may know that they are not alone!
I must remember how Our Blessed Mother, pregnant herself, journeyed to Elizabeth's home in order to provide her with comfort and care. I must remember that she did not think about her own situation or discomfort but instead thought only of her cousin. I must also remember that Jesus commands us to care for each other and love each other and, right now- in my weakened state- this is the best I can do to express my love for my fellow man (or woman).
Blessed be God forever!
I must identify myself as a Catholic because there is just no way of getting around it; if it isn't an issue at the beginning, it will be one as blog entries are published because practicing Catholics are... well... different. It is just as much a culture as it is a religion- especially if one is trying in earnest to live their religion. Catholicism permeates every aspect of my existence and- to a large extent- makes me who I am. I am inseparable from the Church and she is inseparable from me.
Catholics don't believe that dead people become angels; angels are pure spirits that were created before people existed. They are not people and people are not angels; people can never be angels. People die and their souls are always the soul of a human being. This is one thing that sets Catholics apart from followers of other religions. Catholics believe that people go to heaven, purgatory or hell when they die. We also believe that the body dies but the soul does not. We believe that, in the end, our souls will be reunited with our bodies and affirm this every time we say certain prayers; it is actually an important tenant in our belief system. So, things like this are obviously issues when it comes to talking about death with non- Catholics.
So it is hard to hear well- meaning people tell me all about how my baby girl is now an angel... It is also hard to hear people tell me that God knows best and that He has a plan for us when, even though I know this is true, my heart is breaking. There has been a lot that has gone on over the past 6 months that has shaken my faith and has changed my life forever. I think of my faith as a life- saving raft that I must cling to in very stormy seas. This analogy has helped me to hang on even when life seemed unbearable and my humanity gets the best of me.
The death of my four- week old baby girl has changed every aspect of my existence. Nothing is the same. I find that I can't relate to anyone anymore and that I have had to deal with this more- or- less alone because no one "knows what to say". Being so alone in my grief, I have realized that all I have is God; that all else is temporary and fleeting. This is very comforting but also inspires a feeling of extreme desolation. I feel very isolated.
My pastor has been very kind to my husband and I; he prays for us everyday and has met with us when things got really bad. He drove an hour each way to visit my baby in the NICU and to administer "anointing of the sick." It was wonderful to have a messenger of God in such a Godless place. But I have found that women who used to smile and say "hello" to me now just avoid me and stay as far away as possible. It is as if they believe that death is catching. This has hurt. I had hoped to find some support within my parish community but I am finding that this is not going to happen. It seems that some Catholics have forgotten the command to love each other.
So many good things are happening to other people and, although I am happy for them, I just can't relate. I feel so left out. I can't even speak with my best friend anymore. She is so happy and I believe that I can't pretend that things are OK anymore. I don't want to bring her down.
I feel very angry with the doctors, with my family and with God. There is no way of coming to terms with such a loss and it seems so cruel and incomprehensible that God should see fit to take away small babies from the arms of their parents. I know that He does, though, constantly. When I visit my baby at the cemetery, I see hundreds of graves belonging to babies and very small children and I think "what kind of God is this?" I think about each of these parents and the heartache they feel; their tears could easily fill up an ocean. Then I think about all the other baby graves in the US and then all around the world and I know that I am not alone in my grief; there are millions of other mothers in my position.
I pray that these mothers have support and are comforted by friends and family but I am sure that many are not. I am sure that many of these mothers feel much like I do: alone. The mere fact that we have lost babies seems to necessarily separate us from those who haven't lost babies. NO ONE can understand unless they have gone through the same loss.
So, I have decided to break my silence in a very public way. I hope that other mothers will find this blog and read it and understand that they are not alone- that I am thinking of them and praying for them and that we are united in our grief. I also want to express my thoughts and feelings so that others who think and feel the same things will know that they are not nuts and that someone out there understands. It is so hard to say certain things because we are just expected to go about things quietly and most people expect us to just "get over it."
Some of the things I will write will be very personal and embarrassing. I don't mind exposing myself in this way as long as other women may be helped and comforted and may know that they are not alone!
I must remember how Our Blessed Mother, pregnant herself, journeyed to Elizabeth's home in order to provide her with comfort and care. I must remember that she did not think about her own situation or discomfort but instead thought only of her cousin. I must also remember that Jesus commands us to care for each other and love each other and, right now- in my weakened state- this is the best I can do to express my love for my fellow man (or woman).
Blessed be God forever!
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